My History

May 11, 2004

,

Can you tell me about the Thermagram??

Robin

artisticdltv <vasslt@...> wrote:

Thanks to everyone who sent nice welcomes. Several of you asked

about what I have tried so far, so here goes with a brief history

leading up to my present treatment.

I was first diagnosed when my Dr. in London was looking for the

reason my heart medications were not working, and he diagnosed

hypothyroidism, however, could not ascertain why, no goiter,

infection,etc. Was put on indreasing doses of thyroxyl, ending at

125, and told my thyroid was completely unfunctional, no hope of

improvement, stay on meds forever. I am also on nifedepine and

candasartan, for those who keep track.

Three years later, one plus years age, I return to US, Dr. here

gives me same stuff, no new blood tests, told same thing. I had been

feeling less and less well, thought it do to stress I was under,

when I meet my now fiance, a nutrtionist and healer himself, and I

go to an excellent Dr./ naturopath in Plano Tx., case any of you

nearby. Had hair analysis, bloodwork, and thermagram. Guess what,

thyroid marginally functional, could possibly come back online,

suffering extremely high level of chemical toxicisity, Dr. hates

nifedepine.

So, I am still on major detox, major diet change then to follow, off

nifedepine, Dr. thinks I may eventually come off candasartan, on

natural thyroid therapy, not armour, thyroid support of a

homeopathic nature, sorry that's all bottle says, contains natural

T4 and T3, will get specifics for you, being monitored for T4 and T3

levels. The detox is a complete one, chemical and metal, with herbal

and vitamin supplements. End results not in,but my blood pressure

best it has been in 5 years on a constant basis. It is the

thermagram that told a lot of the story, anyone interested without

info I will gladly tell you about it.

Any questions, please ask. I certainly have learned a lot from you

all. Best of health and life to all,

May 20, 2004

hi kim,

i just wanted to cry reading everything you've been through, the pain and

suffering you've endured for so long, and how you've been treated by the medical

community.

No way do I think you're a nut. I don't think you're crazy. After reading this I

love you more. I think you're a sick puppy who needs a decent doctor to help you

get better and recover from all this.

Kim, you're on disability. do you not have Medicaid? i don't understand why

you're having to pay for your own tests and medical treatment.

i don't have answers, Kim. maybe we can all brainstorm.

The only idea I have is for you to copy what you've written to us and sent this

info to maybe Dr. Lowe & Dr. Honeyman. I think they respond to e-mails from

folks. maybe they can offer some advice, direction, and/or suggestions.

I've got to run girl...we're on our way out to meet friends.

don't give up hope! {{{very big hard}}}...hope I'm not chokin' ya...sheila

Girlie <kckim@...> wrote:

28/f/single/on disability..living with mom

Diagnosed with Interstitial Cystitis in 2000 - A severe but non life

threatening bladder disease. After several invasive procedures I now am only

taking quercetin (a natural antihistamine as the bladder is severely

inflamed and thought maybe it is due to mast cells) and oxybutynin which is

a bladder antispasmodic.

Since being diagnosed with " IC " I have become severely alergic to EVERYTHING

which includes food beyong my IBD problems. IC patients cannot eat anything

acidic such as fruit spicey foods, food with tons of preservatives.. I find

even all the salt and preservatives in soup will make my bladder spasms

uncontrollably and painfully. After 12 years of being a vegetarian I started

eating meat (actually to lose weight along with health issues but it hasnt

helped).

When I was about 10 I developed severe abdominal pains. Didn't matter when I

ate. They were crippling and I lost a lot of school , people thought I was

faking it. After seeing doctors for 4 years my Mom finally demanded right

then and there an ultra sound which should I had 8 large gall stones and i

was attempting to pass one every other day. During those 4 years I took

tagament and zantac and every ulcer medicine there was which of course

didn't help. At 15 I had my Gallbladder removed... but the pains continued

which I made a habit of eating pepto everyday. I get these bad hot flashes

pains in my stomach but mostly near my belly button followed by diareah or

constiptaion and i get VERY emotional. Which may be understandable nad

scarey to go through this intense amount of pain where I literally want to

end it all, but I ahve been reading where the gut is our second brain and

how it also can cause people to become emotional, because even when i am

calm and cool aboutt he whole thing i burst into tears for no reason. The

pain comes when i first drink water in the morning to when i havent eaten

for awhil eat night to immediately evacuating food AS I eat it. Its also

seemed that when I eat beef I get food poisoning very easily and will be

vomiting all night. I am also very bloated to the point of being difficult

to walk as any jarring motion brings pain.

I also go into these seisures. I shake violently. Dr's blow it off to

anxiety (theys ay the same with the stomach ahcces).. but I KNOW when I am

anxious as I AM a very anxious depressed and scared individual. I am

panaphobis and agoraphobic (afraid of everything and elaving the house) BUT

I knwo when I am nervous nad have to go to the bathroom because I have a dr

appt and when i am just laying in bed playing a game and have to go to the

bathroom or start shaking. I noticed the shaking stopped when winter came

around. Last week I woke up sweating and went into this shaking fit. I was

calm (ok i was a lil scared cuz I cant stop the shaking) but it was when I

was sleeping. I woke up sweating and trembling and woke up my bf who held my

hand (oh and i get terribly nauseas 24/7 when i eat AND when I do) and he

sat there for the 30 minutes or so with me until the a/c finally got me

chilled and the shaking stopped. I amvery heat intolerant. My boyfriend

thinks I have random heat strokes. I just don't know but it was odd and

greatfully nice! that the shaking stuff stopped for the winter. I had

thought it was because I moved back home. Being almost 30 and on disability

that pays out 400$ a month doesnt gt you a lot of places to live and ive now

maxed out my credit card almost on top of that with these tests and pills i

ahve been trying so yea I am stressed. and my bf makes about as much as i do

with 10 times the debt

I am deathly afriad of pills. The only other pill I am taking is prevacid

which the gastro gave me (figures more ulcer medication) oh and fiber but i

am still contipated even taking the fiber and more bloated and more pained I

think and it hurts my bladder (hurts is a joke makes me wanna reach up my

urethra with a knife literally and yank all the offending aprts out its THAT

bad this stupid IC disease). My insurance wont cover prevacid which actually

was helping my bladder probably because it takes out the acid in food nad

since my bladder is raw and bleeding that helps a lot.. so I am sad they

wont give me prevacid.. they gave me prilosec?? instead which i have yet to

try as i am clinging to my prevacid samples for dear life.

After doing soem research I decided my gastro is also an idiot. He could do

a sinple blood test to check for celiac disease (which is what he is hoping

my pains are from which i dont i think its chrons depite my being super fat)

but he told me he doesnt test for alergies or anything like that and he

doesnt believe in xrays he only believes in looking for himself which to me

sounds like " i cant get money for blood tests but i dont need to buy

anything and charge you my time by sticking a tube down your throat " . So I

asked my internist (who is also a moron) and he said we dont test for that

stuff.. I also asked him for a tpo test nad he said no your normal dont need

that (my tsh was 5.05 retested it was 3.8 after going no soy and I LOVE soy

especially since being a vegetarian and all back growing up)

When I asked my internist for a tsh test he asked ME what the range was

suppose to be and i told him 5.05 was not normal so he said ok heres some

levoxyl. I took a half of the smallest dose and felt ok i went up to a third

and i got shakey and scared (i am terrible at taking meds ..IC patients are

known to be super sensitive so i always gotta try a lil at first especially

with my anxiety problem). First day on a third I got out of the hosue after

singing for 2 hours and pacing the house and drove. first of all i dont sing

anymore I use to sing as a kid and my IC prevents me from walking more than

5 paces (too much pressure on the bladder i guess)..so this was weird.. i

also could watch tv and zone out whcih was really weird since my thots in my

head are always going and dwelling.. and i didnt give a crap about anything

(i am always sad and worried about what others think of me and whats going

to happen in the future).. so i wa slike wow this is crazy.. now i drive a

bit more but NO more than 5 minutes from my house and when i do I gotta make

this bg preperation to get where i am going nad get my butt back asap. well

ihopped in the car and its weird its hard to describe.. instead of thinking

about how was i going to get home or where i was even going i was focused on

the road at that moment wasnt thinking about the past or future just

driving.. fearless (usually im crapping myself with worry).. well i felt

unsafe not worrying and kept thinking a sick eprson like me shouldnt be ont

he road so i went to the post and got home that night i had acheing alll

over my body worse than before and i got scared and quit taking it plus a

panick attack. I think i hurt cuz i hadnt moved that much in 5 years.

I used to walk 16 miles a day every day even at that i was suprememly fat.

Ive done EVERY diet. I did strict NO carbs and lost zero weight only did

that for 2 months as i was fainting from meat overloada nd couldnt evenget

the energy to walk to the bathroom where i was constipated anyway and yes i

did buy fiber. I went on a 1200-1400 calorie diet with protien shakes all of

2003 and at 275 pounds and was doing the best ive ever done at 3 pounds a

month with working out (walking and hour a day even though it KILLEd my

bladder and my exhaustion)

I then got ecoli poisoning and almost died my other dr told me it was

because i didnt walk enough. I thought um liver enzymes are skyrocketed (at

this time iw as on elmiron for my bladder which mucks up your liver

sometimes and which this and my other dr said no it wont and i demanded the

test) I wa slike um i am so dizzy i cant get tot he bathroom i quit eating

entirely because i had been vomitting severly for 6 weeks i couldnt even

drink water and at the time my bf was going thru a thing and would forget my

glass of water and so for a few days i was without water altogether! I went

to the er cuz i would go paralyzed and they said well you are severely

dehydrated go home and drink water bye.. seems to me if you were on the

severest level of dehydration in any other town they'd put you on some sort

of drip but no iw as kicked out. I was terrrified I couldnt even get up and

walk out on my loser bf and this loser community. I was the saddest thing

you ever saw.. me not being able to walk trying to carry my computer to my

car and dropping it half way there cuz i was just too tired. I finally

conviced him to drive me home to portland. I ordered my own damned urine

test (whichthe dr never did and by the time i was in the ER there was no

urine left in me so I doubt it would shown anything besides severe

dehydration)... i moved home to my moms and got my urine test back which

stated very clearly over 100k ecoli... took it to a new urine specialist and

got more antibiotics.

Sorry I am digressing its hard to write in order. so after the thyroid pill

i had been having severe muscle tiredness.. like I had been working out for

a year and they felt soo tired... i couldnt lift my arms and worse yet i did

not imagine arms could hurt THAT much.. i went tot he ER here and they told

me nothing was wrong and that i didnt deserve pain meds and kicked me out...

how can er people honestly think your lying when I was so desperate to come

in at midnight at wait till 5 am!!!! just to see someone.. so i went back to

my internist (meeker) and he said oh well its prob fibro and sent me home...

i was confused. I called the nurse nad was like ok shouldnt he do soemthing

for me.. she was like yea they send you to a special fibro clinic and the

pain meds but the clnic is booked for a eyar so dont even bother.. i was

like um ok but i never got pain meds! and she was all oh ills end ya some

and i got 800mg of ibuprofin. which i wont take cuz my mom has liver disease

and she swears thats how she got it was from all the advil she would take.

i believe fibro to be more than just fibro and i started researching it and

came across thsi guy dr lowe a chiropract i think and he has been doing

studies and believed fibro to be 80 % likely to be a thyroid condition.

which is what made me push for the thyroid tests which i only got a tsh

reading. I ordered the thyodine and took it for three days and didnt notice

anything but then stopped as my abs were so crmapign and i couldnt deal with

NAYTHING in my body let alone pills but when i stopped the thyodine i

started crying again.. for no damned reason. btw i also lost a pound every

day iw as on it 3! but as soon as i stopped i gained it all back.. could

have been a coinicidence tho as i can vary a good 5-10 pounds sadly.

oh which brings me back again to weight... only times i have EVER lsot

weight was when i walking 16 miles a day.. well is topped eating. I ate a

frozen burrito every third day. I was 13 ish. first tiem EVER did i lose

weight went from like 160 to 140!! i was also getting heat stroke a lot

probably.. I would wear out my DOG from walk 8 hours aday.. i coulda killed

her doing that so i tied her up on the baseball diamond in the shade and

walk around her. second time i EVER lost weight was when i lived in afrika

(and it should be mentioned i got mono at a concert there and no i wasnt

kissing anyone).. i was a vegetarian in namibia and ell the meat there is uh

well it sometimes sits out.. cuz its well afrika! and the desert and my

american roomates i think became vegetarians. me and the teacher were the

only vegetarians there which is how i got those meals.. thank GOD for my

hippy teacher!!! but my roommmates gave upt he meat and ate my meals and i

complained nad theyd stop for awhile and start back so i ended up not having

any food and going to the store and buying white bread rolls and cheese

whiz.. figured that would be easiest on my stomach cramps anyway. we also

lived at the bottom of this horendous hill so everytime we wanted to go

soemwhere we had to hike everyday up it and down the otherside and back up

again especially since im too cheap to pay for a cab and how lazy would THAT

have been?? in 4 months i think i went from 188 to 168.. when i got home i

was determined never to gain weight again...but i did even with trying

and then when i got sick with IC and couldnt hardly walk and then the

chronic fatigue which is disabling !!! not the oh i worked 8 hours not im

tired its i just woke up and im too damned tired to go pee!!! and this fibro

in my joints i still cant pick up things with my right arm like my muscle

has been torn off the bone. the most i can exercize is stretching very

gently at nite and to be pathetically honest that KILLS me nad it feels like

i did a whole work out!!! and im dead tired from stretch (while laying down)

so i do it at night where i can maybe sleep which i rarely sleep especially

with the stomach and bladder pain that and i just dont sleep... ugh im dead

sweating now and so nauseas i gotta go to my a/c soon....

oh so anyway when i got IC i went up to 273 went on a good year long diet

actually longer nad got down to 235.. got ecoli and that go me to 215 but

then when i couod drink water again i baloooned right back up to 235

ok so to summerize if you read his far or even understood anything i typed

cuz my brain is a lil random..

I ahve interstitical cystis (bladder inflamation), chronic fatigue,

fibromaygia, prob hypothyroidism, i use to be a genius but now im dumber

than a bricka nd have trouble rememebr my own name let alone sentences.. i

believe thats called brain fog, depression, anxiety, suicidal, shaking,

trembling, hot flashes, IBD (irritable bowel of some sort) and uh...

i have been to a thousand and one dr's and none seem to give a rats ass.. i

even went to anaturo path who wanted me to hop on one foot nad do some sort

of karma dance with the bleach without touching it.. that was suppose to get

the toxins out nad paid a ton of money on pills i knew i couldnt take cuz of

my bladder but iw as dead sick and i couldnt do her voodoo stuff nayway cuz

it took every strength of my being to get to her office and almost had to be

carried in! (that was when i had that ecolie and entero stuff)

see its only noon and ive only had tea nad stomach is crmaping im nauseas

and sooo hot my cheeks are burning (on the other hand if im too cold it

feels like rzor blades)... and im EXHAUSTED i literally have to go to bed

now and my hands are numb from typing

Im sorry if i dont make sense ir eally did try to put my history outthere

tho i am sure i am forgetting soemthing but i ahve to go try not to throw up

now

if you read this and dont think im a nut and still love me thank god for

you... i really hope im not crazy ir eally feel its some hormone doing these

things or some mising link.

oh my mom told me that my great aunts were 400 pound and had my fat upper

arms.. i dont THINK i look my weight but my upper arms are severe overweight

...like abnorally..very sick looking tho i dont look my weight my upper arms

carry a LOT of the weight and that depresses me cuz i can only where loose

fitting long sleeved shirts nad i so want to wear a cute tank top... ive

never been able toe ar cute clothes and feel confident nad trust me this

would make ya vomit no way am i wearing a tank top outdoors so dont even

suggest it.. but it also goes to prove my whole family is fat that meat and

potatoes nad old styles of living does NOT make ya thin.. i get tired of

well look how healthy our forefathers were well mine werent..and i was

raised on tons of veggies and fresh fruit (i had to pick TONS as a child)

and im still fat ..... i can honestly say id ont thinkits my fault im

fat.. F*** dr.phil

okokok im really sick lol.. i gotta go eat my burnt chicken as i am too

tired to even cook and i always forget im cooking...

-me

Re: Audra - Hypothyroidism Remission-thx Shelia

>

> Kim what is so complicated about your illness is that we don't know

> what is going on with you--terrible stomach problems (that we know)

> but what else--are you sure you are hypo as well????

>

> If you were than taking thyodine should of made you feel better and I

> am very confused with you not being able to eat certain food groups

> such as fruits??

>

> I might have missed something because I can't read every detail but

> what is going on with you ??? besides the stomach???

>

> and bladder??

>

> tell us every drug you take--I know you have told us before but give

> us details because I am not sure how we are helping you here?

>

> If you had only thyroid that even over the counter supplements would

> work--so all this extensive expensive testing is not necessary and

> that is what is trying to tell you---to find out and take

> control of what is going on.

>

> But it's confusing to us---if you don't mind me saying so.

>

> WE really can't treat you or give you great advice because it's

> confusing to me as well.

>

> Very complicated cases have to be seen by GREAT doctors and I know

> there are few around---even my daughter has not found that doctor--so

> we can understand but at the same time we have a difficult time

> trying to help as well!!!! support seems to be about the best we have

> been able to do for you.

>

> please give us your age as well and any thing else---tina

>

> > > > I would like to say thanks to all of your great advise

> regarding my

> > > > question.

> > > >

> > > > Many of you had responded that I needed to have my blood work

> > > > retested.

> > > >

> > > > Since I was first diagnosed with this disease at the age of 15,

> > > over

> > > > 13 years ago, I don't remember much about my first tests. Is it

> > > > possible to get your own medical records from my 1st doctor to

> see

> > > > the numbers from when he first decided to put me on

> medication? I

> > > am

> > > > not sure the rules with the new HIPPA laws.

> > > >

> > > > As I stated in my previous message post, the reason that the

> doctor

> > > > took me off the medication is because my test had come back

> normal

> > > > after he decided to stop the medication. My T4 at the last test

> > > ran

> > > > at 10.2 and my TSH is at 1.65. The labs are stating that this

> is

> > > > within mormal ranges. Do your ranges very depending on where

> you

> > > are

> > > > at in your menstral cycle? I also have done research on basel

> > > temps

> > > > that are below 97.8 preovulatory are also an indication of

> > > > hypothyroidism. Has anyone else ever heard of this? Mine temps

> > > are

> > > > below 97.8.

> > > >

> > > > Has anyone else ever taken researched info to their doctor

> family

> > > or

> > > > OBGYN and had him/her look it over and not relied solely on lab

> > > > results?

> > > >

> > > > Again,

> > > >

> > > > Thanks for all of your help.

> > > >

> > > > Audra

> > > >

May 20, 2004

i have care oregon and medicare(or maybe its medicaid i always get it mixed

up) and they pay for everything but not when my dr says no no way will i

test for that..thats why i am ordering them on my own cuz its that or sit

here and die ya know?

thanks for writing me back means a lot to me everytime!!!!youve no idea

Re: Audra - Hypothyroidism Remission-thx Shelia

>

> >

> > Kim what is so complicated about your illness is that we don't know

> > what is going on with you--terrible stomach problems (that we know)

> > but what else--are you sure you are hypo as well????

> >

> > If you were than taking thyodine should of made you feel better and I

> > am very confused with you not being able to eat certain food groups

> > such as fruits??

> >

> > I might have missed something because I can't read every detail but

> > what is going on with you ??? besides the stomach???

> >

> > and bladder??

> >

> > tell us every drug you take--I know you have told us before but give

> > us details because I am not sure how we are helping you here?

> >

> > If you had only thyroid that even over the counter supplements would

> > work--so all this extensive expensive testing is not necessary and

> > that is what is trying to tell you---to find out and take

> > control of what is going on.

> >

> > But it's confusing to us---if you don't mind me saying so.

> >

> > WE really can't treat you or give you great advice because it's

> > confusing to me as well.

> >

> > Very complicated cases have to be seen by GREAT doctors and I know

> > there are few around---even my daughter has not found that doctor--so

> > we can understand but at the same time we have a difficult time

> > trying to help as well!!!! support seems to be about the best we have

> > been able to do for you.

> >

> > please give us your age as well and any thing else---tina

> >

> > > > > I would like to say thanks to all of your great advise

> > regarding my

> > > > > question.

> > > > >

> > > > > Many of you had responded that I needed to have my blood work

> > > > > retested.

> > > > >

> > > > > Since I was first diagnosed with this disease at the age of 15,

> > > > over

> > > > > 13 years ago, I don't remember much about my first tests. Is it

> > > > > possible to get your own medical records from my 1st doctor to

> > see

> > > > > the numbers from when he first decided to put me on

> > medication? I

> > > > am

> > > > > not sure the rules with the new HIPPA laws.

> > > > >

> > > > > As I stated in my previous message post, the reason that the

> > doctor

> > > > > took me off the medication is because my test had come back

> > normal

> > > > > after he decided to stop the medication. My T4 at the last test

> > > > ran

> > > > > at 10.2 and my TSH is at 1.65. The labs are stating that this

> > is

> > > > > within mormal ranges. Do your ranges very depending on where

> > you

> > > > are

> > > > > at in your menstral cycle? I also have done research on basel

> > > > temps

> > > > > that are below 97.8 preovulatory are also an indication of

> > > > > hypothyroidism. Has anyone else ever heard of this? Mine temps

> > > > are

> > > > > below 97.8.

> > > > >

> > > > > Has anyone else ever taken researched info to their doctor

> > family

> > > > or

> > > > > OBGYN and had him/her look it over and not relied solely on lab

> > > > > results?

> > > > >

> > > > > Again,

> > > > >

> > > > > Thanks for all of your help.

> > > > >

> > > > > Audra

> > > > >

May 22, 2004

is your prescription medication also paid for, Kim? Hugs, Sheila

Girlie <kckim@...> wrote:i have care oregon and medicare(or maybe its

medicaid i always get it mixed

up) and they pay for everything but not when my dr says no no way will i

test for that..thats why i am ordering them on my own cuz its that or sit

here and die ya know?

thanks for writing me back means a lot to me everytime!!!!youve no idea

Re: Audra - Hypothyroidism Remission-thx Shelia

>

> >

> > Kim what is so complicated about your illness is that we don't know

> > what is going on with you--terrible stomach problems (that we know)

> > but what else--are you sure you are hypo as well????

> >

> > If you were than taking thyodine should of made you feel better and I

> > am very confused with you not being able to eat certain food groups

> > such as fruits??

> >

> > I might have missed something because I can't read every detail but

> > what is going on with you ??? besides the stomach???

> >

> > and bladder??

> >

> > tell us every drug you take--I know you have told us before but give

> > us details because I am not sure how we are helping you here?

> >

> > If you had only thyroid that even over the counter supplements would

> > work--so all this extensive expensive testing is not necessary and

> > that is what is trying to tell you---to find out and take

> > control of what is going on.

> >

> > But it's confusing to us---if you don't mind me saying so.

> >

> > WE really can't treat you or give you great advice because it's

> > confusing to me as well.

> >

> > Very complicated cases have to be seen by GREAT doctors and I know

> > there are few around---even my daughter has not found that doctor--so

> > we can understand but at the same time we have a difficult time

> > trying to help as well!!!! support seems to be about the best we have

> > been able to do for you.

> >

> > please give us your age as well and any thing else---tina

> >

> > > > > I would like to say thanks to all of your great advise

> > regarding my

> > > > > question.

> > > > >

> > > > > Many of you had responded that I needed to have my blood work

> > > > > retested.

> > > > >

> > > > > Since I was first diagnosed with this disease at the age of 15,

> > > > over

> > > > > 13 years ago, I don't remember much about my first tests. Is it

> > > > > possible to get your own medical records from my 1st doctor to

> > see

> > > > > the numbers from when he first decided to put me on

> > medication? I

> > > > am

> > > > > not sure the rules with the new HIPPA laws.

> > > > >

> > > > > As I stated in my previous message post, the reason that the

> > doctor

> > > > > took me off the medication is because my test had come back

> > normal

> > > > > after he decided to stop the medication. My T4 at the last test

> > > > ran

> > > > > at 10.2 and my TSH is at 1.65. The labs are stating that this

> > is

> > > > > within mormal ranges. Do your ranges very depending on where

> > you

> > > > are

> > > > > at in your menstral cycle? I also have done research on basel

> > > > temps

> > > > > that are below 97.8 preovulatory are also an indication of

> > > > > hypothyroidism. Has anyone else ever heard of this? Mine temps

> > > > are

> > > > > below 97.8.

> > > > >

> > > > > Has anyone else ever taken researched info to their doctor

> > family

> > > > or

> > > > > OBGYN and had him/her look it over and not relied solely on lab

> > > > > results?

> > > > >

> > > > > Again,

> > > > >

> > > > > Thanks for all of your help.

> > > > >

> > > > > Audra

> > > > >

May 22, 2004

yea.. most of the time

Re: Audra - Hypothyroidism Remission-thx

Shelia

> >

> > >

> > > Kim what is so complicated about your illness is that we don't know

> > > what is going on with you--terrible stomach problems (that we know)

> > > but what else--are you sure you are hypo as well????

> > >

> > > If you were than taking thyodine should of made you feel better and I

> > > am very confused with you not being able to eat certain food groups

> > > such as fruits??

> > >

> > > I might have missed something because I can't read every detail but

> > > what is going on with you ??? besides the stomach???

> > >

> > > and bladder??

> > >

> > > tell us every drug you take--I know you have told us before but give

> > > us details because I am not sure how we are helping you here?

> > >

> > > If you had only thyroid that even over the counter supplements would

> > > work--so all this extensive expensive testing is not necessary and

> > > that is what is trying to tell you---to find out and take

> > > control of what is going on.

> > >

> > > But it's confusing to us---if you don't mind me saying so.

> > >

> > > WE really can't treat you or give you great advice because it's

> > > confusing to me as well.

> > >

> > > Very complicated cases have to be seen by GREAT doctors and I know

> > > there are few around---even my daughter has not found that doctor--so

> > > we can understand but at the same time we have a difficult time

> > > trying to help as well!!!! support seems to be about the best we have

> > > been able to do for you.

> > >

> > > please give us your age as well and any thing else---tina

> > >

> > > > > > I would like to say thanks to all of your great advise

> > > regarding my

> > > > > > question.

> > > > > >

> > > > > > Many of you had responded that I needed to have my blood work

> > > > > > retested.

> > > > > >

> > > > > > Since I was first diagnosed with this disease at the age of 15,

> > > > > over

> > > > > > 13 years ago, I don't remember much about my first tests. Is it

> > > > > > possible to get your own medical records from my 1st doctor to

> > > see

> > > > > > the numbers from when he first decided to put me on

> > > medication? I

> > > > > am

> > > > > > not sure the rules with the new HIPPA laws.

> > > > > >

> > > > > > As I stated in my previous message post, the reason that the

> > > doctor

> > > > > > took me off the medication is because my test had come back

> > > normal

> > > > > > after he decided to stop the medication. My T4 at the last test

> > > > > ran

> > > > > > at 10.2 and my TSH is at 1.65. The labs are stating that this

> > > is

> > > > > > within mormal ranges. Do your ranges very depending on where

> > > you

> > > > > are

> > > > > > at in your menstral cycle? I also have done research on basel

> > > > > temps

> > > > > > that are below 97.8 preovulatory are also an indication of

> > > > > > hypothyroidism. Has anyone else ever heard of this? Mine temps

> > > > > are

> > > > > > below 97.8.

> > > > > >

> > > > > > Has anyone else ever taken researched info to their doctor

> > > family

> > > > > or

> > > > > > OBGYN and had him/her look it over and not relied solely on lab

> > > > > > results?

> > > > > >

> > > > > > Again,

> > > > > >

> > > > > > Thanks for all of your help.

> > > > > >

> > > > > > Audra

> > > > > >

June 18, 2005

H ,

sounds lke you have been through a lot-I too had the childhood

problems but my hip was dislocated and got a sucessful surgery nine

months ago aged 32.

I dont think that we need fear revisions if the initial surgery

wasn't great. I have been on these boards about a year and have

heard of people who either had fractures during their initail

surgery and heaven forbid-infections-who are now on their 2nd THR's

and pain free and doing good. Some younger people here have had 3, 4

and 5 sucessful surgeries.

Before my surgery, the head of my femour was squashed like SCFE

except that I had a dislocated hip and the head of the

femour 'died'. They removed 2 inches from my femour by breaking my

leg at the trocheanter as well as adding 2 inches of grafts to my

socket-I have a plate in the greater trocheanter and pins in the

pelvis plus the THR-but I am doing great 9 months post op! Going to

the gym, working full time etc and getting my career back on track

now that the chronic pain has gone. I think you might get back to

that with the help of a good surgeon who deals with young peoples

hips and revisions.

Your surgery may be hard but find a surgeon who takes things like

this in his stride. I think my surgery was as hard as they get but a

good surgeon likes the challenge! What I am trying to say is that

surgeons want us to accept that things can go wrong-I had/have a

high chance of infection as I had 10 years of bone infections from

childhood surgery. When my surgeon added up the risks of nerve

damage 4%(I had the leg lengthened 2 inches), infection-at 4 % as I

had numerous post op bone infections prior to the THR, dislocation

5%-as I had a congenitally dislocated hip and previous surgeries the

muscles weren't in great shape. I forget all the other risks but

they were approaching 25%-STILL i WAS IN PAIN AND WANTED MY LIFE

BACK AND MY SURGEON SAID THAT HE HAD DONE MANY SURGERIES LIKE MINE

BEFORE-i ALSO KNOW A FEW OF HIS PATIENTS who did well so I went for

it-actually I had to insist on surgery-my choice..

I really feel for what you have been through and when you feel

strong enough, and in the right hands I think you can get a

sucessful surgery-your surgeon need to be THE top guy at whatever

hospital you are at and not one who does 'routine' THR's

Once the bones are in place, the muscles amazingly recover, even

ones that have been cut as much as mine! My x-rays look like I have

been hit by a truck at the same time as getting the THR but I had a

good outcome and have zero pain now. I would recomend my surgeon

except i'm in Scotland-he only does difficult cases :-)Is your

surgeon good-I hope he is not the one who did the old surgery?

It is lovelly to hear your storyy. You can teach us a thing or two

about coping with all this I think,

best wishes,

Leigh

>

September 7, 2005

-Dear Nan,I love to hear the stories of folks. I am knew to the site

and have been so absorbed in reading everthing I can about all the

folks on the site..I found it so comforting to know I was not

crazy,these things were really happening to me, I was not a cry

baby...I have been in such god awful pain from flatback which I never

heard of until 8/16th after I visited my Ortho and after sveral

emergency room trips for unbelievable pain..I wanted to

die,seriously, I thought please just take me, I could not walk,stilll

can't without server pain..I now go to the Mall with my 14 year old

daughter who wants to shop til you drop and she must push me in a

wheelchiar!!!!!This all just started happening over the last few

months,yeah, I always had those achy knees,lower back pain but not

this....It is freigtening....Please share anything you feel

comfortable with, I feel so much better to know I am not alone in

this...-- In , " dams4all "

<dams4all@y...> wrote:

> I have been reading all your posts for awhile & I thought maybe

> you'd like to hear my story, so here goes.

>

> I was diagnosed at age 14 with ideopathic scoliosis. At the time

of

> my diagnosis, my curve, was not bad enough to consider surgery. We

> decided to wait it out and I began physical therapy and wore the

> lovely brace. By the time I was 16, the curve had progressed to

> 90/56. Surgery was performed at Hospital for Special Surgery in

> 1967 by Dr. Doherty. We lived in Ct. at the time. I was told

> that I would require one, maybe two surgeries, however it turned

> into four & I was in the hospital for three months. After the

> second surgery, I developed a staph infection from the rods. I was

> then put on massive doses of antibiotics, which did not clear up

the

> infection, and so the decision was made to remove the rods. Before

> they could remove them, the fusion had to take. I laid there for

> weeks with a drainage tube in me, removing the infection, all the

> while being a teenager & stuck in an isolation unit because of the

> staph. Weeks later, the rods eventually came out. As everyone

else

> can remember, there were months of bedrest in a body cast and

> learning how to walk all over again. However when it was all said

&

> done my curve was corrected as well as it could be and I was on my

> way. Done forever with back surgeryy, or so I thought. (I was

> initially fused from T-3 to L-4.)

>

> I went on to college, married, had two kids,(minus the epidurals),

> and stayed fairly active. There really wasn't anything that I

> could'nt do, except bend from the waist. About 1982, I began to

> experience a lot of lower back pain. I have a pretty high tolerance

> for pain, and tried to ignore it, but soon became so bad that I

went

> to see an ortho in Knoxville, Tn, where I was living then. His

> theory was that I was putting too much pressure on my remaining

> unfused discs, so he suggested fusing those lower discs.L-5 thru S-

> 2. He fused them both anterior & posterior, two weeks in between.

I

> was then back in a brace again,for a few months.

>

> All was well again, until at the grand old age of 38, I became

> pregnant again. ( Can you say OOPS!) I'm kidding, she keeps me

young!

> When she was about 10 months old, I started to notice that when I

> would walk or stand for long periods at a time, my legs and hips

> would hurt so badly. I went from doc to doc in search of an answer.

> My husband was transferred about every two years, so I sought help

> in Tampa,Orlando and Gainesville, Fl. and Atlanta Ga. I was

> beginning to think I was crazy! Everyon said they couldn't explain

> it. As the years progressed, the amount of time that I could stand

> or walk decreased rapidly.

>

> In 1999, I was in a severe car accident, and had two additional

> cervical fusions on top of everything else. Finally in 2004, we

> moved back to Knoxville, where I am now, and I have found a

> wonderful ortho who has diagnosed flatback. It was such a welcome

> relief. I came home & couldn't get enough of reading & absorbing

> every thing I found online. It was so inspirational! Then I found

> you all, and I now look forward to a well prepared journey with new

> found acquaintances who can so appreciate what we all are going

> thru.

>

> I am just in the beginning of my journey, & I am prepared to get

the

> revision surgery done. I have 3 grandkids and I want to be able to

> walk with them when they are able & I am too!

>

> Bless you all!

> Nan

September 7, 2005